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The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop

CONTEXT: A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. OBJECTIVES: To generate recom...

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Autores principales: Evans, Catherine J., Benalia, Hamid, Preston, Nancy J., Grande, Gunn, Gysels, Marjolein, Short, Vicky, Daveson, Barbara A., Bausewein, Claudia, Todd, Chris, Higginson, Irene J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3858887/
https://www.ncbi.nlm.nih.gov/pubmed/23628515
http://dx.doi.org/10.1016/j.jpainsymman.2013.01.010
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author Evans, Catherine J.
Benalia, Hamid
Preston, Nancy J.
Grande, Gunn
Gysels, Marjolein
Short, Vicky
Daveson, Barbara A.
Bausewein, Claudia
Todd, Chris
Higginson, Irene J.
author_facet Evans, Catherine J.
Benalia, Hamid
Preston, Nancy J.
Grande, Gunn
Gysels, Marjolein
Short, Vicky
Daveson, Barbara A.
Bausewein, Claudia
Todd, Chris
Higginson, Irene J.
author_sort Evans, Catherine J.
collection PubMed
description CONTEXT: A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. OBJECTIVES: To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. METHODS: An international expert “workshop” was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. RESULTS: There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. CONCLUSION: Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement.
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spelling pubmed-38588872013-12-11 The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop Evans, Catherine J. Benalia, Hamid Preston, Nancy J. Grande, Gunn Gysels, Marjolein Short, Vicky Daveson, Barbara A. Bausewein, Claudia Todd, Chris Higginson, Irene J. J Pain Symptom Manage Special Article CONTEXT: A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. OBJECTIVES: To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. METHODS: An international expert “workshop” was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. RESULTS: There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. CONCLUSION: Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement. Elsevier 2013-12 /pmc/articles/PMC3858887/ /pubmed/23628515 http://dx.doi.org/10.1016/j.jpainsymman.2013.01.010 Text en © 2013 Elsevier Inc. https://creativecommons.org/licenses/by/4.0/ Open Access under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/) license
spellingShingle Special Article
Evans, Catherine J.
Benalia, Hamid
Preston, Nancy J.
Grande, Gunn
Gysels, Marjolein
Short, Vicky
Daveson, Barbara A.
Bausewein, Claudia
Todd, Chris
Higginson, Irene J.
The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop
title The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop
title_full The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop
title_fullStr The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop
title_full_unstemmed The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop
title_short The Selection and Use of Outcome Measures in Palliative and End-of-Life Care Research: The MORECare International Consensus Workshop
title_sort selection and use of outcome measures in palliative and end-of-life care research: the morecare international consensus workshop
topic Special Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3858887/
https://www.ncbi.nlm.nih.gov/pubmed/23628515
http://dx.doi.org/10.1016/j.jpainsymman.2013.01.010
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